Sarcoma survivor and Rein in Sarcoma volunteer, Miranda Mead, has served for the past three years as a Peer Reviewer for the United States Department of Cancer Peer Review Panel. Miranda works with leading researchers, scientists, and oncologists from around the country to determine which cancer research proposals they fund.
This year, Miranda was asked by Dr. Donna Kimbark, Program Manager for the CDMRP, to serve as the speaker for at the Congressionally Directed Medical Research Programs (CDMRP) meeting on Friday, August 27. Dr. Kimbark has managed research funding programs for autism, multiple sclerosis, cancer, and bone marrow failure syndromes. Miranda opened with a Moment of Silence presentation to remind everyone of the importance of the work and the many lives affected.
The CDMRP, created in 1992 via a Congressional appropriation, fosters novel approaches to biomedical research to support the needs of the American public, the military, and Congress.
The CDMRP funds high impact, high risk and high gain projects that other agencies may not fund. All of the programs managed by the CDMRP share the common goal of advancing research, solutions that will lead to cures or improvements in patient care, or breakthrough technologies and resources. The CDMRP strives to transform healthcare through innovative and impactful research.
Thank you, Miranda, for being a part of this team and raising awareness about sarcoma cancers.
Rein in Sarcoma has been asked by KJT Group to promote a study they are conducting for people living with PEComa. They are looking for PEComa patients who may be willing to share their experiences. KJT Group will be conducting 60 minute virtual discussions with qualified patients. By sharing feedback with their research team, you can help improve treatment experiences and outcomes of others like you.
If you have been diagnosed with PEComa and would be willing to discuss your experiences with KJT, complete the survey. You will be asked a few questions about your background and experience. If you qualify for the study, there will be the opportunity to immediately schedule an interview.
Blake Hastings, RIS Board Director, Melissa Davies, Development Director, Dr. Brenda Wigel (UMN), Eric Lien, RIS Board Vice President, Janelle Calhoun, RIS Executive Director, and Tom Boardman, Development Committee Chair.
Rein in Sarcoma’s Board approved a research grant to the 2021 University of Minnesota at its January meeting. The number of grants were reduced based on buget decisions made in the spring of 2020. The University solicited requests for funding proposal from their researchers, blindly ranked them according to national standards, and recommended the proposal by Dr. Jaime Modiano, School of Veterinary Medicine to the RIS Research Committee.
We are pleased to fund this research, and look forward to a presentation on findings at the Sarcoma Research Symposium in 2023. Dr. Modiano has received Rein in Sarcoma research funding in prior grants. He shares with us:
“The data from our previous Rein in Sarcoma grants has helped us secure almost $6M in external grants for sarcoma research from the federal government (NIH and DOD), the state of Minnesota, and animal health foundations. These grants have been instrumental in helping us to complete work that is reported in numerous peer reviewed scientific articles as well as in lay articles. We are extremely proud of our return on investment from this meritorious program.”
Identifying and Characterizing the Cells that Create the Primary and Metastatic Sarcoma Niche | $50,000
Jaime Modiano, VMD, PhD
Jaime Modiano, VMD, PhD – Principle Investigator, Professor of Veterinary Medicine & Research
Aaron Sarver, PhD – Co-Investigator, UMN Medical School Assistant Professor Institute for Health Informatics
Sarcomas, or tumors of connective tissues, are challenging to treat because they tend to invade deep into tissues. This behavior makes it virtually impossible to remove all of the cancer even with very aggressive treatments. But some sarcomas pose even greater challenges because they spread to organs far from the primary tumor. In these tumors, the distant spreading, called metastasis, is the eventual cause of death for patients.
Aaron Sarver, PhD
Primary tumors of bone (osteosarcomas) and of blood vessels (angiosarcomas) are two highly metastatic sarcomas. The assumption with these cancers is that malignant cells have already spread by the time they are diagnosed. Because of this, patients receive extremely intensive therapies that can have severe side effects. Even so, more than half of patients with bone cancer and with blood vessel cancers die from their disease within about 10 and 3 years, respectively. For bone cancer, a 10-year survival might seem acceptable, were it not for the fact that this cancer mostly affects children, adolescents and young adults. It is well accepted that osteosarcomas and angiosarcomas spread through the blood circulation. This has led many investigators to search for tumor cells in the blood. We pioneered this approach for angiosarcoma almost two decades ago. But recent technological improvements provide opportunities to understand how and why the tumor are able to travel to distant sites. In addition, we are now able to find the chaperones that help them colonize new organs and create homes where they can thrive.
Osteosarcomas and angiosarcomas are quite rare in people. On the other hand, both are very common in dogs. We have shown that studying these diseases in dogs can help us better understand, diagnose, and potentially manage them in people. Here, we will use the same approach, studying tumor cells in the circulation of dogs with osteosarcoma and angiosarcoma. We will apply a technology called single cell sequencing. We have already developed methods to find and recover these cells from simple blood samples. Our goal is to determine how tumor cells and their chaperones alter their behavior to support the process of metastasis. The information we obtain from this project will support grant applications to the NIH, DOD, and other agencies. This line of work will help us to identify the cells that are responsible for sarcoma metastasis. In turn, the results will guide development of tests for early detection and to monitor disease progression. And finally, our efforts will provide insights to design new, safe and effective therapies to manage or prevent metastasis.
Charlie Gerk with wife and RIS volunteer, Danielle Gerk
Sarcoma survivor and RIS volunteer Charlie Gerk recently participated in the evaluation of research applications submitted to the Peer Reviewed Cancer Research Program (PRCRP) of the Congressionally Directed Medical Research Programs (CDMRP).
Charlie was nominated for participation in the program by Rein in Sarcoma. As a consumer reviewer, he was a full voting member, (along with prominent scientists) at meetings to help determine how the $110 million appropriated by Congress for Fiscal Year 2020 will be spent on cancer research.
About the PRCRP program
Consumer reviewers are asked to represent the collective view of patients by preparing comments on the impact of the research on issues such as diagnosis, treatment, and quality of life. When commenting on serving as a consumer reviewer, Charlie said that, “he was heartened to know so many dedicated people are working hard on cures for sarcoma”.
Consumer advocates and scientists have worked together in this unique partnership to evaluate the merit of research applications since FY09. COL Sarah B. Goldman, Director of the CDMRP, expressed her appreciation for the consumer advocates’ hard work. “Integrating consumer perspectives into our decision-making process brings energy and focus to our research programs. Patients, caregivers, family members, and advocates help us keep our efforts centered around what is truly important to those impacted. We very much value this critical input from our consumers who help ensure that CDMRP’s work remains critical and relevant,” she said.
Scientists applying propose to support and promote high-impact research for cancer prevention, detection, treatment, quality of life and survivorship, and decreasing the burden of cancer on Service members, their families and the American public. The PRCRP fills important gaps not addressed by other funding agencies by supporting groundbreaking research while encouraging out-of-the-box thinking.
If you are interested in learning more about participating in the CDMRP’s Scientific Peer Review Panels, please contact Janelle Calhoun, Rein in Sarcoma’s Executive Director at (763) 205-1467 or execdirector@reininsarcoma.org.
Dr. Julie Chu, a Hematology-Oncology physician at Children’s Hospitals and Clinics of Minnesota, loves to care for her individual patients. And when the person with cancer is a child, family members too become like patients. Pediatric cancer medicine is very family-centered, and the wishes, feelings and perspectives of the adults will impact the care of a child. Each child is a person, not a number or a diagnosis. Many different aspects of each person will impact their illness, their care and their coping.
Dr. Chu has been interested in cancer since her father died of stomach cancer when she was in high school. In college, she found Biology and Biochemistry to be fascinating subjects. Her mother always wanted her to be a doctor, but she was not so sure. Then she took her graduate school and medical school entrance exams, and decided a finite course in medical school would be better than an indefinite quest for a doctorate.
Pediatric medicine was a given, because Dr. Chu always liked kids. After attending medical school at the University of North Dakota, she served as a Resident at the University of Minnesota, where she “just loved” her rotations on the hematology-oncology floor. Dr. Chu left the Midwest for sunshine and warmth. She took her Hematology-Oncology Fellowship at Children’s Hospital in Los Angeles, California. Then, for a time, she began practicing in Oregon. When she was offered an opportunity to come back to the Midwest, to practice with Children’s Clinics in St. Paul, she wanted to return. She “always liked the way they practiced medicine in Minnesota,” and feels comfortable around Midwestern people. Now, after office consolidation, she practices in Minneapolis. Many of the patients she treats have some form of sarcoma.
Dr. Chu “really likes taking care of sick patients” and finds it rewarding to meet with new patients who have serious, life-threatening problems. There is never a dull moment, and many of them overcome their problems, do well, and are able to move forward. She said, “it always surprises me.” You have cases where you think people are so sick, and then “fast forward six months and they’re playing. You still have a mental picture of them intubated and in the Intensive Care Unit.” Other children look well, but run into complications. Each person is unique.
What has struck Dr. Chu through the years is how variable coping is. Culture, emotional state, and personal preferences all play a role. Often, when families have been coming to the hospital for a long time, and have gotten to know the routine and the people, they feel most comfortable at the hospital. It can be difficult to face taking all that away. But when time is short, people may want to go home or visit somewhere else.
Dr. Chu has attended Rein in Sarcoma’s Party in the Park several years, with her fellow oncologist Dr. Nancy McAllister. She also serves on the Medical Advisory Committee working with the Red Flags Campaign. The group has created materials and begun to increase outreach, to try to help patients and doctors identify sarcoma cancers early, before surgery is performed. There needs to be a balance, so not everyone is exposed to the risk of scanning. But better decisions could be made if more people knew about sarcoma.
When asked to name her favorite kind of sky, Dr. Chu recalled an early morning when she was returning from the health club, and how fascinating it was to see the sky completely cloudy in one direction; then, when she turned a different way, it was clear and blue. And in Arches National Park in Arizona, it was amazing how bright blue the sky was. It was so blue.
Her favorite colors? Green and purple.
And I am grateful for having had the privilege to talk with Dr. Chu.
It is hard to watch patients die. Yet getting to know people who face cancer and seeing how they persevere can be gratifying and inspirational. Treating cancer patients helps keep University of Minnesota Professor and orthopaedic surgeon Dr. Ed Cheng grounded and provides him with perspective. Dr. Cheng considers it a privilege to be a physician, to have the opportunity to care for people every day. He also considers Karen Wyckoff to be a great example of how “you can make a difference. One person can make a difference.”
Dr. Cheng was not involved in Karen’s medical care. He knew that patients who are motivated can make a difference, however, and was intrigued by the opportunities her ideas presented. So when the University of Minnesota asked for a doctor to help out with the new organization, carried forward by her parents, he agreed. Dr. Cheng became a founding board member. It has been “quite exciting” to see Rein in Sarcoma grow. RIS has generated energy and enthusiasm at the University, money has been raised to support cancer research, educational materials have been created for doctors and patients, and a new website has been developed. RIS Dr. Cheng teaches surgery at 2010 Mini-Medical School really has been “instrumental in the care, management and support of patients who have this terrible disease, sarcoma.”
When asked how he became involved in the educational video prepared for patients facing amputation, Dr. Cheng said: “You know they say ideas are born out of necessity, and that was certainly the case here.” The life-changing effects of losing a limb are “so paramount,” patients need to sort through this over a much longer time frame than is available in an office visit. Patients need to understand not only the functional and logistical changes they can expect but also the psychosocial aspect of coping with the loss of their limb. They need to have this information provided in a way that is sensitive and compassionate. If doctors don’t provide help for patients going through this challenging process, they are missing the “art of medicine.” One way to help patients is by hearing and learning from others who have gone through similar experiences.
But when Dr. Cheng set out to look for resources to share with his patients, he couldn’t find them. He identified this as an unmet medical need and decided to ask RIS for funding to help create materials. RIS did award funding, and Dr. Cheng led the efforts to make a video including interviews with adults who have undergone major surgery and limb amputation. He personally found the movie clips inspirational to watch. He learned things he had not known about what people experience, and he has incorporated this knowledge to help his discussions with new patients.
The intent of the video was to help as many people as possible, so it is posted on YouTube as well as the websites of the University’s Cancer Center Sarcoma homepage and Rein in Sarcoma. With time, more and more people are watching the clips, some from places far away.
Those who’ve been involved in making the movie have noted the gratification of knowing that they’ve helped people elsewhere, some of whom they haven’t even seen. “So we have to say thank you to KWRISF,” Dr. Cheng added, “because without them we would not have been able to do it.” Another RIS-funded video is in process to address children’s experiences.
Dr. Cheng always wanted to be a doctor, since he was a boy in elementary school. He received his Medical Degree from Northwestern University in 1983 and did a General Surgery Residency there. He moved to Harvard, where he completed an Orthopaedic Surgery Residency in 1989 and Fellowships in Orthopaedic Oncology and Pediatric Orthopaedic Oncology in 1990. Also in 1990, Dr. Cheng joined the University of Minnesota faculty. He has practiced here ever since.
From time to time, of course, Dr. Cheng does leave the state. For example, this was his second year traveling to Mongolia as a medical missionary, as part of his ministry through the Christian Medical & Dental Society. Dr. Cheng felt called to a broader mission, beyond his practice here, and wished to offer this service in Christ. He had the opportunity to consult with physicians in Mongolia and help care for their patients. He found it rewarding to educate doctors about cancer treatments and complex joint replacements and to help them build their infrastructure. “This is not giving them a fish, but teaching them to fish,” which may leave a lasting legacy. And through the wonders of electronic communication, Dr. Cheng can continue to consult with physicians there, even from his place in Minnesota.
Dr. Cheng loves his work as a physician. “How many people have the chance to help someone out all the time?” he asked. Every day, he gets to “see all these stories” and meet new people. He also has the chance to teach other doctors. And one never knows what else may come along. “RIS just popped up,” he said, and “look what it’s become.” Dr. Cheng would encourage young people who are interested to consider this career. He also would encourage people to “have confidence in knowing that if you think big, you can make a difference.”
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